My wife, 47, had a stroke in March. Since May, she’s been home, and going to outpatient rehab 3 days a week. My mother-in-law has been paying for a caregiver the other two weekdays. Yesterday she told me she can only do that for two more weeks.
So I’m panicked and overwhelmed. My wife isn’t in a condition to be left alone - she’s recovering, but some cognitive stuff isn’t back. Recently she put an empty pop can, and pizza box, in the dishwasher. She tried to use a spoon like a straw. If left alone, she could put metal in the microwave, try to use a sharp knife like a fork, or something horrible.
Has anybody dealt with this? What did you do? I’m considering asking work if I can work 4 days a week for 10 hours a day, which would ‘solve’ one day (but leave my wife without care for a couple of hours at the end of three days).
Look into Adult Daycare. Hopefully her cognitive facilities will continue to improve, and after a while she won’t need it… it costs a little but should be less than having a carer come to your house. A lot of Adult Daycare places will send a van around to come pick her up, too.
Would your work environment allow you to have her with you during the day? One of my employees had a situation with her child recently. She brought her kid to work for a few weeks and everyone pitched in to help keep her occupied.
Do you have health insurance? Contact your carrier and see if this is covered. Maybe they won’t pay 100% of home visits or daycare, but they might pay a portion.
If your employer is over a certain size, and you’ve worked a minimum number of hours for (I think) at least the past 6 calendar months, you are eligible for leave via FMLA. It’s a federal program, and only very small employers are exempt from the law. FMLA leave would be unpaid, but your employer is likely required to allow you to take off a number of hours in a rotating 12-month period. So unless you work for a tiny company, you should be able to take off work to take care of her as needed. If you describe your situation to your manager and the HR department, they will (hopefully) explain the FMLA program to you and be willing to work with your reduced availability (especially if this is just a temporary thing). All you need to qualify for FMLA is a note from your wife’s doctor stating she needs home care and you are the only one who can provide it.
Depending on where you are and how much you have in cash assets, there are programs that can assist with home daycare for adults. There are also programs like Maggie mentioned where you would take her in the morning and then pick her up after you get off work.
Here in Minnesota, much of it is run through the county, but I think there are state programs as well. Start dialing your country social services workers and go from there.
Thanks for the suggestions. My health insurance covers rehabilitation but not care.
I talked with a social worker, and it looks possible, because of our lack of liquid assets, that we could qualify for some state assistance. It could cover some visits and even transportation when she’s independent enough to go to places on her own.
My mother didn’t have a stroke per se, she developed fluid on the brain, which presents very similar to TIA (mini stroke).
I had to give up my life and became her full time carer. I am paid a Social Welfare payment for my troubles. I don’t know where you live, so can’t advise on similar for you.
I fear the same will happen to you. Sorry, but that’s how it goes. Society looks at you and says “oh aren’t you wonderful to do what you do” and turns it’s back on you. The medical profession can often be extremely unhelpful. Your family and friends will abandon you because being a carer is a “privilege” and it’s “own reward” and you don’t need their help. If you try to get them to help you, they’ll drop contact with you. This has been mine, and many other carers experience.
Start searching online for anything to do with carers in your area, see if there’s a support group you can join, ask your doctors and nurses, check the noticeboard at the hospital or other clinic you attend for flyers pertinent to your situation (you won’t have seen them when you didn’t need them!), flyers etc may be available at your local library.
A good book to read (if you can get it) is The Selfish Pig’s Guide to Caring, which was written by a man who became his wife’s carer. If you can’t find it, let me know, I have a copy I can pass on to you.
Find other carers near you whom you can talk to (if there isn’t a support group), those of us who have been there, done that can be of invaluable help finding resources.
Hopefully your wife’s condition will improve and she will regain her health, and you’ll both be able to get on with your lives again.
What level of care does your wife need? If she needs someone to feed her , dress her , help her use the toilet, etc your options are going to be different than if she just needs someone to be present to make sure she doesn’t do anything dangerous or damaging like putting metal in the microwave or letting the tub overflow. Caregivers trained to care for adults who need assistance in feeding, bathing, toileting etc are more expensive than sitter/companions for those who just need general supervision and it’s possible your mother-in-law has been paying for the expensive first type, while your wife needs the second.
If you don’t qualify for state assistance and can’t pay for daycare , there may be programs run by a city or state agency, charitable organizations, churches etc. When we were looking for respite car for my father, I told my mother to contact the local senior citizen center. Although they didn’t have a program suitable for my father, they were able to provide information about other agencies that did.
At this point, it’s pretty much just making sure she doesn’t get into trouble. She can mostly dress herself (with a little help from me), and use the bathroom. I help her shower.
This would suggest that a “keep her from setting fire to the house” sort of carer is all that’s required (not that those aren’t expensive too!!).
Have you looked into applying for Social Security disability for her? While that can be a pretty torturous road (as some here have found), it’d be good to get things rolling on that. I don’t know what kind of help they would provide, but even a small disability stipend might pay for, say, adult daycare.
If your work offers dependent care flex spending, that can (I’m 99% sure) be used to help with a disabled adult. Obviously to use that, you have to be able to spare the cash, and there are enrollment windows, but it’s something to keep in mind when your next “open season” happens.
This doesn’t make sense. There are people who collect disability payments who’ve been disabled for their entire lives, and thus NEVER been able to work. She might still be eligible for SSI.
You should at least look into this, and consult with a social worker at your Social Security office. They can tell you what’s out there better than anyone else.
You need a consultation with a Medical Social Worker. Call your wife’s physician’s office and ask for a referral. It may cost you something out of pocket (or your insurance may pick it up), but it’s a Medical Social Worker who knows this stuff, and knows what programs are available in your area and what your wife may qualify for.
And yeah, it sucks. I do home health care - Medicare patients only, which means I can only see people with a “skilled nursing need” like tracheotomies, ventilators, complicated dressing changes, etc. and that only for 60 days. Sometimes I can beg another 60 days out of certain doctors. But then that’s effectively it, barring truly unusual circumstances, and I have to sit there and look people in the eye and tell them that I can’t come see them anymore even though they really, really need help. It sucks. We have no good long term caretaking system for people who aren’t rich and are too sick to be alone but too well to need skilled nursing in our country. That will probably change as the Baby Boomers get older and feeble, but it’s going to be an uphill battle that no one wants to pay for.
Anyhow, that aside, it’s a Medical Social Worker you’re looking for. Good luck.
I did, of course. The date she became disabled is arguable (she had surgery in 2009 which incapacitated her for a while, then a seizure in late 2010 that took a long time to recover from). But there were years that she did not work because of our kids, and other years where her part time work didn’t count (college instructor - somehow, because she was working for a public school, they didn’t pay into social security - I was totally unaware of that weirdness). The upshot is there were several years in the past ten where she was not disabled, so could have worked, but did not (or her job wasn’t ‘in on’ the social security thing - you can’t really control that, can you?).
All that came of going to SS was maybe she’ll qualify for medicare in two years.
Her rehab days run out next Wednesday. My medical insurance will not consider approving more therapy sessions until those are done, and they make no promise on the turnaround. So I could be stuck with another sort of ‘doughnut hole’ between therapy rounds.
If I borrow off my 401K, I should be able to pay a caregiver for a bit, and it may help us qualify for state-sponsored care (lowering our assets).
Anybody looking for a ‘takeaway’ from this thread, here it is: don’t have a stroke in the US.
I honestly have no idea. I’m supposed to arrange a consult with a Medical Social Worker so that they can talk to the patient (and caregiver, if there is one) about what options exist in the community, but I don’t myself know much about them. I’d really like to sit in on one of those conversations to learn, but I haven’t found an MSW willing to let me yet.
There are a few I know of, but not the details or who qualifies. Things like Meals on Wheels, or local charities who provide free housekeepers or adult day care. Other people may need to learn how to choose a nursing home, or find out more about just how poor they have to get (and how to do so legally) so that they qualify for Medicaid, rather than Medicare. Medicaid *will *pay for long term residential care, but you have to be truly poor to qualify. They won’t pay for *good *long term residential care in a nice facility with a decent staffing ratio, mind you, but they won’t let you freeze on the street, either.
